| | Joined: Aug 2008 Posts: 38 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Aug 2008 Posts: 38 | I am going to have a Pre-op visit with my Doctors at Johns Hopkins for hemi-glossectomy this Friday the 2nd. I just can't get/stay cancer free. Successfully bet back the lung mets but the mouth just won't settle down.
After reading many of your posts I don't feel so horrible about the impending surgery. Thanks for all of your sharing.
Bill
Bill age 47 at Dx, non-smoker
1st DIAG: 8/06/2008 SCC BOT T4N1M0
2nd Diag 10/14/09 Mets in lungs
3rd diag 06/23/2010 Primary Site malignant
Hemi-glossectomy July 2
In surveillance post re-IMRT and Carbo. Lots of scar tissue, hi-FDG Uptake on PET, no lump. Feel Fine, CLEAR for now.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 |
Bill, Im so sorry to read that you have to fight this battle again. Ive done it 3 times in 3 years too. Best of luck with everything that is coming up. There are alot of people on here who have undergone what you will be having done. You know to lean on OCF for support. We are here for you.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Jan 2009 Posts: 54 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jan 2009 Posts: 54 | Bill,
I remember reading about your success with the lung mets. I wish you well with your next challenge. I notice you were diagnosed on exactly the same day as my partner. I am feeling a bit wobbly about him at the moment. His throat is looking very red and has been for a long while now, but he has seems satisfied with a consultant's recent cursory peer at it. I am not quite so sure....but can't get him to follow up. Although I am sorry you are back, I am glad that your consultants have got surgery scheduled soon. Christine is certainly a great example to inspire.
Will be thinking of you.
Cathy | | | | | Joined: Jun 2010 Posts: 111 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2010 Posts: 111 | Good luck!!
I (kind of) know how you feel. Cancer just wont leave my mother alone. At least your surgery is somewhat less invasive..I know that doesnt help because its happening to you and it is scary. But hopefully youll be in and out of the hospital in a flash and you can put it all behind you
best of luck
my mom, age 59.
12/08 surgery & 33x rad
4/09 recurrence
5/09 surgery & 35x rad
12/09 recurrence
1/10 surgery. peg tube, trach, fibula free flap
6/10 recurrence. double chemo treatments.
8/10/10 finally at peace in heaven
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Bill
Cancer coming back is so hard. Sure is frustrating for those of us who get it more than once. Hang in there.Here's hoping that the surgery alone does the trick this time. Remember my outcome was a worst case scenario and not typical at all. The majority of posters here do just fine with this particular surgery.
Charm .
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | Bill,
I�ve had 3 partial glossectomies � two this year, and the last one in April was at Johns Hopkins. Excellent surgeon, facility and support staff. Of course the surgery itself wasn�t pleasant but the outcome was good.
You are in one of the best hospitals in the USA for treatment. I wish you the best with your upcoming surgery and I'll keep you in my prayers.
Susan
SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
| | | | | Joined: Aug 2008 Posts: 38 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Aug 2008 Posts: 38 | Thanks all. I am feeling much better about the surgery. Met with the Head and Neck surgeons and one of the plastic surgeons today. Next step is to show up at 0530 Friday.
I am set.
Bill age 47 at Dx, non-smoker
1st DIAG: 8/06/2008 SCC BOT T4N1M0
2nd Diag 10/14/09 Mets in lungs
3rd diag 06/23/2010 Primary Site malignant
Hemi-glossectomy July 2
In surveillance post re-IMRT and Carbo. Lots of scar tissue, hi-FDG Uptake on PET, no lump. Feel Fine, CLEAR for now.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Bill, please post when you are able to. Or better yet, have someone post that all is ok after your surgery. You have lots of friends on OCF who care. Best wishes for a successful operation to get rid of your cancer. This time for good!!!!
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Aug 2008 Posts: 38 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Aug 2008 Posts: 38 | It's been awhile, two weeks since my surgery. I am recovering at home as planned. Surgery on the 2nd. Released on 7th. Swallow study on the 9th. Working the PEG feedings with 8-12oz of soup and yogurt. Arm very sore, neck stiff, but not too painful. Jaw very tight.
Surgical biopsies were clear in the lymph nodes, all margins clear. They want to treat in case of any residual.
Back to JHH for RAD/ONC consult on the 20th, looks like re-radiation.
Thanks all for reading.
Bill
Bill age 47 at Dx, non-smoker
1st DIAG: 8/06/2008 SCC BOT T4N1M0
2nd Diag 10/14/09 Mets in lungs
3rd diag 06/23/2010 Primary Site malignant
Hemi-glossectomy July 2
In surveillance post re-IMRT and Carbo. Lots of scar tissue, hi-FDG Uptake on PET, no lump. Feel Fine, CLEAR for now.
| | | | | Joined: May 2010 Posts: 135 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2010 Posts: 135 | Bill, so glad you are doing well after the surgery and that the margins were clear. Keep up the great work with nourishment and aggressively going after this illness. You are in my thoughts and prayers.
Dodie
Aunt diag. 2/4/10 with SCC Stage I/II on left side of tongue. Surgery 2/19/10 part. gloss./neck diss. on left side/free flap from chest muscle. TI/II,NO,MO. Clear margins with perineural invasion. Started rads 4/8/10 - 35 treatments, finished 5/26/10.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Hi Bill. Thanks for the update. Excellent news about clear margins and lymph nodes!!!! Glad the operation is behind you and you are healing. Have the doctors allowed you to do any jaw exercises to avoid trismus? Thats how mine got so bad was not being able to exercise when had surgery. Hope you do not run into that. Good that you are able to eat a little bit. Thats pretty quick so it sounds like you must be doing pretty good considering what you have gone thru. Sorry to hear about doing rads again. Wishing you pain-free days of fast healing in the future. Please keep in touch. Your OCF pals will be here in your corner cheering you on
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Jun 2010 Posts: 111 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2010 Posts: 111 | hi bill. best of luck for recovery!! so sorry u have to do the god awful radiation again.
my mom, age 59.
12/08 surgery & 33x rad
4/09 recurrence
5/09 surgery & 35x rad
12/09 recurrence
1/10 surgery. peg tube, trach, fibula free flap
6/10 recurrence. double chemo treatments.
8/10/10 finally at peace in heaven
| | | | | Joined: Aug 2008 Posts: 38 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Aug 2008 Posts: 38 | I am now 6 weeks post surgery and 2 weeks into Chemo/Rads. I had RX #6 today, Chemo #2 Tomorrow. Eating is going pretty well. If I can chew it, I can swallow it, except for spaghetti. Fish is the best, green veggies are wonderful.
No serious mouth pain from RX yet, it is about a 1-2 right now. I will probably be on pain killers within a week, I can feel the effects piling on. Chemo is pretty light, Zofran totally took care of any side effects from the first bag.
Day by day,
Thanks.
Bill age 47 at Dx, non-smoker
1st DIAG: 8/06/2008 SCC BOT T4N1M0
2nd Diag 10/14/09 Mets in lungs
3rd diag 06/23/2010 Primary Site malignant
Hemi-glossectomy July 2
In surveillance post re-IMRT and Carbo. Lots of scar tissue, hi-FDG Uptake on PET, no lump. Feel Fine, CLEAR for now.
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